………………………I live in a relatively small town in sleepy Norfolk in England, I pause and hesitate from saying Great Britain as one thing being disabled has taught me is that we are far from great in how we deal with, treat, and make provision for disabled people, we’re getting better but some peoples attitudes are still stuck in the times of Queen Victoria others are just ignorant to the needs of disabled people. When I’m in my chair my wife often gets asked does he take sugar, some people are afraid/nervous around us and I get that but for the most part we want to be human beings who can get around with our aids, dogs, carers whatever it may be and to be asked questions about our hobbies even if it seems weird asking someone who once played football did you see the match. It is rare we will take offence life is too short and too precious to us waste time on negativity.
Anyway having waffled off topic, well as the blog suggests I do waffle on, back to the title. My disability is gradually getting worse year on year, having spent 24 years of my life relatively fit and healthy and taking my health for granted a car accident one fateful November evening changed everything. I spent close to four years reliant on others, I then through physio, hardwork and determination managed to get some degree of life back even managing to return to work. Over the years my back pain has increased, my hours of work have decreased in line with the increase in pain and the flare ups. My meds have been under constant review and although we are settling on a regime that is beginning to make my pain bearable to function with the basics getting up and dressed and limited socialising (albeit with a lot of support from others) there are high doses of pregabalin and methadone as part of them and it creates kind of a brain fog causing issues with memory, concentration, sudden tiredness and mid sentence sleep it is being adopted as a way of life for me. I have a lot of support getting me showered and dressed in the morning and my wife and family acts as my PA’s getting me too appointments and reminding me of things that I forget.
Well as the days drift into weeks, months and years and my mobility decreases I find myself relying on others, users more mobility aids and life changing. This inevitably leads me into bumping into people who I haven’t seen for a number of years who are surprised to see me in as much pain and as “bad I am” this then leads to the inevitable selection of questions and/or statements
- Well isn’t there more they can do my friend/family/neighbour/school mums cat had X/Y & Z done!
- Have you tried……………………………..
- How are you not comatose on all that medication?
- Don’t you wish things were different?
- I can’t believe how much worse you are now, how do you live like it!
- I wouldn’t want to live with my life with what you have to put up with!
- How do you get up each day!
- I’m really sorry for you.
- Give us some of your tablets.
I kid you not these questions and or statements are regularly asked/made (obviously not all of them) when people see me for the first time in a while, or get the chance to sit and have a catch up. Now some of them are easily laughed off, some are easy to explain and others are harder to explain to the point of a little man inside me getting up and taking the piss by running out of the room shouting are fecking serious………………… instead you sit there (usually cornered in the wheelchair) unable to escape so the standard responses have to be rehearsed but real enough to stand up to a few more questions, some are no brainers, others just don’t really need answering and the person saying it soon squirms after uttering the words. The responses are
- Nah, I’m not that stupid to reveal all of defence mechanisms just yet, you never know who is reading, suffice to say the simple ones are that I’m not comatose because the medication is fighting the pain and nerve damage so although I do have a fuzzy brain I am getting some benefit, no I’m not giving you my tablets without them life would be bed ridden, don’t be sorry for me and trust me I will give anything my specialist team suggest a try.
- Most importantly for me here is don’t feel sorry for me or disabled people help them live as best they can normal lives, and don’t ever say you couldn’t live like me. Fate chose my life 13 years ago, strength I never knew I had keeps me going, strength that is built on solid foundations of my family and friends, strength that only when you are at your weakest or most vulnerable will you discover you have/